Month: October 2015

Recently, a fellow nurse sent me an article she found disturbing titled “The miracle of dying” from the Los Angeles archdiocesan newspaper.

The article is ostensibly about the laudable goal of promoting emotional and spiritual healing for a dying person with comprehensive hospice and palliative care when cure is not possible.

Unfortunately, the article begins with the story told by Diane, dean of nursing at a Catholic university in California, about her father’s death. Diane’s frail, 99 year old father living in a Florida assisted living facility with no apparent life-threatening illness called her to say “I’ve outlived my usefulness. I’m ready to go”. When he decided to quit eating and drinking, Diane arranged for hospice care.

According to the article, it wasn’t long before the hospice nurse called back, saying it would take about 48 hours for her father to die and Diane took a flight to Florida to be there when he died. The obvious impression left is that her father’s wish to stop eating and drinking was granted by the hospice.

Was Diane’s father evaluated physically and psychologically? I have seen many elderly people who also felt their lives were useless successfully treated for depression as well as elderly people who had physical problems with eating regain their health with professional help. Why would we just send them to a hospice without exploring other options?

When I worked in hospice years ago, we would never have approved deliberate starvation and dehydration even at the patient’s request. We followed the trusted hospice philosophy that we neither hasten nor prolong the dying process. Unfortunately, we are seeing that ethical standard eroding to just honoring a patient’s “choice” to die. Ominously, state reports in Oregon, the first state to legalize physician-assisted suicide show that over 90% of reported physician-assisted suicide victims were enrolled in hospice.

Terminal Sedation

The rest of the article discusses death and California’s new physician-assisted suicide law with an ethicist and a doctor connected with Catholic health care institutions. While neither man supports the new California assisted suicide law, the comments by Roberto Dell’Oro, director of Loyola Marymount University’s Bioethics Institute are particularly alarming. Note this section from the article:

“For years, doctors have performed what’s known as “terminal sedation,” not to end somebody’s life but to make their patients more comfortable. Estimates of very seriously ill patients being terminally sedated have ranged from 2 to more than 50 percent. But the subject is rarely brought up in public.

One of the pillars it rests on goes back to the “double-effect” rule attributed to St. Thomas Aquinas in the 13th century, which justifies killing in times of war and for self-defense.

Regarding end-of-life matters, the principle posits that even when there’s a foreseeable bad outcome (death), it is morally acceptable if the intentional good outcome (relief of pain) outweighs it.

‘It’s a matter of stopping feeding and increasing pain medication that leaves you to die,’ explained Dell’Oro. ‘It’s not the practice of assisted suicide. Because the motivation, the intentionality of the physician remains the alleviation of pain, not the killing of the patient. That’s the fundamental difference.’ (emphasis added)

Voluntarily Stopping Eating and Drinking – When patients die naturally of chronic diseases, such as cancer, bodily changes take away their appetite, and they stop eating before they die. Some people decide to speed up the dying process by voluntarily stopping eating and drinking (VSED), which also relieves some of the symptoms common to dying. If a patient is already close to death, VSED usually leads to death in one to three weeks. Many people have used this method successfully….C&C believes hospice care is essential during VSED.” (Emphasis added)

In the case of terminal sedation which they call “palliative sedation”, it is described as:

Some dying patients experience so much pain or such unmanageable symptoms they cannot get relief from medications unless the dose is high enough to make them unconscious. Palliative sedation provides enough medication to keep the person unconscious and continuously pain and symptom-free. All nutrients and fluids are stopped, and the person usually dies within a few days. Patients using palliative sedation should be monitored around the clock to be sure the sedation is adequate. Intensive monitoring can be done at home under hospice care. (Emphasis added)

Of course, Compassion and Choices is working to legalize physician-assisted suicide throughout the US but, in the meantime, note that it endorses VSED (voluntary stopping of eating and drinking) and terminal sedation in hospice as a legal alternative.

When I was a hospice nurse in the mid-1990s, terminal sedation and withholding food and water were unthinkable. We worked hard to make sure our terminally ill patients and their families had physical, emotional and spiritual support. It was gratifying to hear our patients and families tell us how meaningful and even healing the experience was. I even saw some dying people unexpectedly linger until an issue was resolved, a loved one came to the bedside or even until the family was ready.

When we try to just get death over with as soon as possible, we are really abandoning our dying patients and their families at one of the most important and momentous events in their lives. We need to respect death not accelerate it.

But even before such legislation is made, Canada’s second largest province Quebec is jumping to allow to active euthanasia via lethal injections.

In a shocking article in the British Medical Journal titled “’Euthanasia kits’ are prepared for Quebec doctors as palliative care centres rebel on right to die” , new guidelines from the College of Medicine in Quebec on physician-assisted suicide include “euthanasia kits”. These kits contain three sequential injections: a benzodiazepine sedative to relieve anxiety, a barbiturate to induce coma, and a curare-type neuromuscular block to stop the heart and respiration with backup doses, and detailed instructions. These kits will be available to all licensed physicians in Quebec. (Emphasis added)

Ironically, this lethal injection protocol mimics the lethal injection protocols used in the US for executions that are now being challenged by groups like the ACLU as “cruel” and “inhumane.”

The rationale for doctor-administered lethal injections over the self-administered oral lethal overdoses just signed into law in California is explained in the BMJ article:

The college decided that doctors should administer the drugs intravenously rather than simply prescribe an oral drug. Yves Robert, secretary of the college, said that this had involved seeking advice from abroad, including speaking to the first doctor to legally prescribe life ending drugs in Oregon, USA, nearly 20 years ago. “He told us there were some bad side effects,” Robert said, including regurgitation and, in a few cases, reawakening days later.” (Emphasis added)

Apparently, the annual Oregon state health reports on assisted suicide that rely merely on the assisting doctors’ self-reporting of problems are not much of a “safeguard”. Nonetheless, all the public (and the Canadian supreme court) continues to hear is that physician-assisted suicide laws are working well without any problems.

PUSHBACK

But the existence of euthanasia kits is not the whole story.

As the BMJ article reports, all 29 of Quebec’s palliative care centers announced a collective decision not to offer physician-assisted suicide, now renamed “medical aid in dying.” At least for now.

One director stated that “There is no doctor here who’s willing to push that syringe.”

“Once again, this is a comment that prioritizes the views of the physician, when the law is made for the patient,” said Barrette. “I have a very formal announcement to make to these doctors: physicians, nowhere in Quebec, are owners of the institution. Not of the institution, nor of the floor, nor of a single bed. In no way can a doctor say: ‘In room 326, this will never happen.’ That is completely inappropriate.”

It is a myth that physician-assisted suicide will only ever involve oral lethal overdoses requested by terminally ill patients in unbearable pain. As we have seen with the relentless progression of medically assisted killing in Holland, Luxembourg, and Belgium, it is just a matter of time before lethal injections are considered more humane than unreliable oral overdoses and the pool of potential victims expands beyond the terminally ill and just those who request it.

Tragically, it is a very short step from saying “I would not want to live like that” to saying “No one should live like that.”

Like those doctors of conscience in Quebec, those of us in the US who are also medical professionals need to be our own Resistance Movement against medicalized killing and the efforts to coerce us into participating.

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In 1982, I was appalled when I read about the Baby Doe controversy in which the parents of a newborn boy with Down Syndrome refused a common but life-saving surgery, leaving him to die of starvation and dehydration while lawyers were appealing his case to the US Supreme Court. Four months later, I gave birth my third child, a beautiful little girl named Karen Ann who had Down Syndrome and a major heart defect. Picture of Karen’s homecoming.

.In 2000, I wrote an article about Karen. I reprint it here in honor of my Karen and Down Syndrome Awareness month:

“Of course, no one wants to adopt a defective baby. ” This was said with much emotion (and not much charm) by an older gentleman in a class at a local university where I was speaking this past April. I had been invited to discuss the legalities and effects of Roe v. Wade from a pro-life point of view to a class of senior citizens studying the Constitution and the Supreme Court.

While several of these senior citizen students defended abortion as a matter of complete privacy for the mother, their arguments centered around the “need” for legalized abortion as a solution for social problems.

Since I had told the story of my daughter Karen, born in 1982 with Down Syndrome and a severe heart defect, the pro-abortion students were extremely vocal about the personal and societal justifications for aborting a baby like Karen. Hence the statement about no one wanting to adopt a “defective” baby.

“Happily, sir,” I told the senior student, “You are wrong. Even back when I had Karen, I found out from the National Down Syndrome Association that there was a list of people waiting to adopt a baby with Down Syndrome. Just the night before, I added, I had found a new website for matching prospective parents with children who had chromosomal and physical defects.

The student refused to believe that this could be true.

The effects of Roe v. Wade
Life of the mother, incest, rape and fetal defect are the four hard cases usually cited to justify what has now become abortion on demand. All of these are uncommon reasons given in the estimated 1.3 million abortions every year; but the possibility of having a child with a birth defect is a common fear nearly all expectant mothers experience and, not surprisingly, polls show that the majority of the public support abortion in this circumstance.

Although I have always been pro-life, I could understand the fear underlying these poll results. Then my own daughter was born.

Just two weeks before the birth of my daughter Karen, I saw a mother trying to pry her young son with Down Syndrome away from a display case at the supermarket. She looked exhausted.

“Please, Lord,” I silently prayed, “Let this baby be ok. I can handle anything but Down’s.”

When Karen was born with Down Syndrome, I was stunned. But I was quickly put in touch with mothers from the Down Syndrome Association who replaced my fears with information and realistic hope.

Then a doctor told me the truly bad news. Karen had a heart defect, one so severe that it seemed inoperable and she was not expected to live more than 2 months. That certainly put things in the proper perspective.

What “pro-choice” really means
It turned out later that Karen’s heart defect was not quite as bad as originally thought and could be corrected with one open-heart surgery, but I was shocked when the cardiologist told me he would support me 100% if I decided not to agree to the surgery and allow her to die. This was especially hard to hear because, as a nurse, I knew that the doctor would have been otherwise enthusiastic about an operation offering a 90% chance of success — if my child didn’t also have Down Syndrome. Apparently, even though Karen was now a legal person according to Roe v. Wade by the fact of her birth, this non-treatment option could act as a kind of 4th trimester abortion.

It was then that I realized what pro-choice really meant: Choice says it doesn’t really matter if a particular child lives or dies. Choice says the only thing that really matters is how I feel about this child and my circumstances. I may be “Woman Hear Me Roar” in other areas according to the militant feminists, but I was not necessarily strong enough for a child like this.

I also finally figured out that Roe v. Wade’s effects went far beyond the proverbial desperate woman determined to end her pregnancy either legally or illegally. The abortion mentality had so corrupted society that it even endangered children like my Karen after birth. Too many people, like the student in Supreme Court class, unfortunately viewed Karen as a tragedy to be prevented.

Medical progress or search and destroy?
In the late 1950s, a picture of the unborn baby using sound waves became the first technique developed to provide a window to the womb. Ultrasound in recent years has been used to save countless lives by showing women that they were carrying a living human being rather than the clump of cells often referred to in abortion clinics.

But while expectant parents now routinely and proudly show ultrasound pictures of their developing baby, there is a darker side to prenatal testing. Besides ultrasound, which can show some birth defects, blood tests like AFP testing and the Triple Screen to test for neural tube defects or Down Syndrome are now becoming a routine part of prenatal care. Amniocentesis and chorionic villus sampling are also widely available tests to detect problems in the developing baby. It seems that every year, new testing techniques are tried and older ones refined in the quest to find birth defects prenatally.

97% of the time, women receive the good news that their baby seems fine; but the tests are not foolproof, and they can only test for hundreds of the thousands of known birth defects. Relatively few such birth defects can be treated in the womb at the present time. Some women want testing so that they can prepare for a child who has a birth defect, but when the tests do show a possible problem like Down Syndrome, up to 90% of women will abort.

While some hail prenatal testing as a way to prevent birth defects, the effects of such testing has led to what author Barbara Katz Rothman calls the “tentative pregnancy” in her 1993 book of the same name. Although Rothman calls herself pro-choice, her studies of women considering amniocentesis led to her conclusion that such testing has changed the normal maternal-child bonding in pregnancy and the experience of motherhood, usually for the worse.

“I might not be pregnant”
I observed this firsthand several years ago when I ran into an acquaintance and congratulated her on her obvious pregnancy. I was stunned when she replied, “Don’t congratulate me yet. I might not be pregnant.”

“Diane”, the mother of a 5-year-old boy, went on to explain that she was awaiting the results of an amniocentesis and said, “I know what you went through with your daughter but I can’t give up my life like that. If this (the baby) is Down’s, it’s gone.”

I reassured her that the test would almost surely show that her baby was ok, but I added that if the results were not what she expected I would like her to call me. I promised that I would give her any help she needed throughout the pregnancy and that my husband and I or even another couple would be willing to adopt her baby. She was surprised, as I later found out, both by my reaction and the information about adoption.

Diane gave birth to a healthy baby girl a few months later and apologized for her comments, saying that she probably would not have had an abortion anyway. But I understood her terrible anxiety. Society itself seems to have a rather schizophrenic attitude towards children with disabilities.

On one hand, people are inspired by the stories of people who have disabilities and support organizations like the Special Olympics; but, on the other hand, many people consider it almost irresponsible to bring a child with disabilities into the world to suffer when prenatal testing and abortion are so available.

But as the vast majority of parents who are either natural or adoptive parents of children with disabilities will attest, all children are born with both special gifts and special limitations. No child should be denied birth because of a disability or even a limited life expectancy.

Women who do abort after a diagnosis of a birth defect are also hurt. Besides depriving themselves of the special joys — which occur along with the difficulties — of loving and caring for such a child, these women often experience unresolved grief, guilt and second-guessing instead of the relief and peace they expect.

A few years ago, a local hospital which performs late-term abortions for birth defects asked a miscarriage and stillbirth counseling group to help with their distressed patients. The group declined, citing the fact that the most reassuring message they give grieving mothers is that there is nothing they did or didn’t do that caused the death of their babies. Obviously, that was not a statement they could make to mothers who abort. There is a very real difference between losing and terminating a child.

How many of these mothers knew before their abortions that, in practical terms, there has never been a better array of services and support for children with disabilities and their parents? Or that their children were dearly wanted by prospective adoptive parents? Such information might have been just the support they needed to choose life for their children.

Final thoughts
Despite the best medical care, my Karen died at the age of 5 and 1/2 months, but the impact of her life has lived on. At her funeral Mass, the priest talked about how this child who never walked or talked had transformed the lives of those who met her.

Especially mine.

After Karen died, I sat down and tried to put into words what Karen and all children with disabilities have to teach the rest of us. The following reflection was published in the National Down Syndrome Association newsletter in May, 1984.

THINGS NO TEACHER EVER TAUGHT
In 1982 my daughter, Karen, was born with Down Syndrome and a severe heart defect. Less than six months later she died of complications of pneumonia. Karen may have been retarded but she taught me things no teacher ever did.

Karen taught me:

That life isn’t fair — to anyone. That self-pity can be an incapacitating disease. That God is better at directing my life than I am. That there are more caring people in the world than I knew. That Down Syndrome is an inadequate description of a person. That I am not “perfect” either, just human. That asking for help and support is not a sign of weakness. That every child is truly a gift from God. That joy and pain can be equally deep. That you can never lose when you love. That every crisis contains opportunity for growth. That sometimes the victory is in trying rather than succeeding. That every person has a special purpose in life.

When California Governor Jerry Brown signed the physician-assisted suicide law, he wrote

“In the end, I was left to reflect on what I would want in the face of my own death,” the governor wrote. “I do not know what I would do if I were dying in prolonged and excruciating pain. I am certain, however, that it would be a comfort to be able to consider the options afforded by this bill. And I wouldn’t deny that right to others.”

Gov. Brown apparently believes the two myths promulgated by pro-assisted suicide organizations and most mainstream media about physician-assisted suicide: 1. Unbearable pain is routine in terminal illnesses and often cannot be relieved. 2. Unbearable pain is the reason people choose physician-assisted suicide.

As a former hospice, oncology, trauma, and critical care nurse, I made sure my patients had the best pain control possible after one unforgettable incident that happened shortly after I graduated from nursing school.

In 1969, I cared for a 32-year old woman I will call “Joan” who was dying from cancer. Joan looked emaciated with her skin stretching over her bones and she was in terrible pain. Joan’s pain was so intense at times that she even talked about wanting us to kill her. At the time she was on a relatively small dose of Demerol given by an intramuscular shot every 4 hours as needed for pain.

I gave her the shot, wincing as I injected it into her shrunken buttock but the shot did nothing for her pain. I went to my head nurse who said to repeat the injection in four hours but “Joan” continued to have intense pain.

I reported this to my head nurse and Joan’s doctor, suggesting that the dose be increased and/or given more often. The doctor told me no because he said he did not want her to “become addicted” to pain meds. I couldn’t believe my ears. I told him that she was imminently dying, even asking us about killing her to relieve the pain. Joan didn’t have to worry about addiction. I knew that from nursing school. The doctor still refused.

I went over his head to the chief of staff and the assistant director of nursing to plead for Joan. Instead, I was told that if I gave Joan her shot even 15 minutes earlier than the 4 hours, I would be fired.

I was frustrated to the point of tears but I knew there was one thing I could do.

I spent the last two days of Joan’s life with her as much as possible while working my shifts. After my shifts, I would sit with her for hours telling her stories, stroking her back, and doing whatever I could to distract her from the pain until she finally fell asleep. I would not abandon her.

After Joan died, I decided to learn everything I could about pain relief so that I could rebut a future ignorant doctor and help my patients. And I did. I studied every article on pain relief that I could find and talked to experts in the field as well as experienced colleagues. I’m still doing this 46 years later.

I never again had a patient die with severe pain.

For example and 20 years later, I started working on an oncology (cancer) floor in honor of my mother who I cared for until she died from cancer and Alzheimer’s disease. As I promised my father, I made sure she was comfortable and Mom was even alert and in good spirits at the end.

I loved my new job in oncology but one day I came in hearing a woman down the hall screaming. That was unusual on our floor. It turned out that this woman I’ll call “Kim” was also a 32-year old woman with terminal cancer.

Kim’s pain had been under good control at home with long-acting morphine pills supplemented with fast acting morphine pills to relieve breakthrough pain. However, her family mistakenly thought that since her pain was relieved, she did not need to take her long-acting pills. Kim agreed but the result over a short time was terrible pain unrelieved by slowly increasing a morphine drip.

Working with the doctor, I came up with an overnight game plan to aggressively and quickly treat her extreme pain. The doctor agreed after I promised to monitor Kim closely so that her breathing would not be compromised.

By the next morning, Kim’s pain was finally under control and shortly afterward, she was able to be discharged home on her usual medication regimen.

Governor Brown, using pain as a reason to enlist doctors and nurses to help patients kill themselves is perverse not only because pain can be controlled, especially with the medical advances we have today but also because Oregon’s own reportshows that physician-assisted suicide victims in Oregon cited “Losing autonomy”, “Less able to engage in activities making life enjoyable”, “Loss of dignity”,“ Losing control of bodily functions” and “Burden on family, friends/caregivers” before “Inadequate pain control or concern about it” as the top end of life concerns.

Personally, I will continue to fight for good pain and symptom control for all patients as passionately as I oppose physician-assisted suicide.

Comment: Note the quote about why Governor Brown signed this bill after it was defeated 4 times in committee with weeks of deliberation: “In the end, I was left to reflect on what I would want in the face of my own death,” the governor wrote. “I do not know what I would do if I were dying in prolonged and excruciating pain. I am certain, however, that it would be a comfort to be able to consider the options afforded by this bill. And I wouldn’t deny that right to others.”

Unfortunately, it seems too many people base their judgements about physician-assisted suicide based on possible future self-interest rather than what the bill allows-medicalized killing by suicide-instead of the terrible consequences on people at risk, medical ethics and society.

Almost 20 years ago and before Oregon implemented its physician-assisted suicide law, I wrote the following commentary for the January-March 1996 edition of the Patients Rights Council newsletter. I believe it is just as valid today.

All the B-movie scenes I watched as a child flashed through my mind when I heard that a convicted murderer had been recently executed by firing squad. My visceral reaction was to cringe, instantly imagining the terror of being blindfolded and waiting for the bullets to hit. What I couldn’t imagine, though, were the feelings of being one of the men called to pick up and aim a piece of cold, hard steel at another human being. Would the man cope by pretending it was just another round of target practice? Would he try to remember the details of the murders and the tears of the victims’ families to muster the outrage that such crimes call for? What did he feel after the execution — sadness or satisfaction?

I was not surprised to later learn that one of the firing squad guns contained only blank bullets. In such circumstances, it is sensible to protect each executioner from the certain knowledge that he personally ended another’s life. In the more common lethal injection executions, the process is said to include at least two people and two buttons to start the process. Again, the procedure for legally terminating another life tries to protect those whom society asks to perform the awful task.

It is ironic, therefore, that society is considering the addition of yet another kind of execution to the legal list — assisted suicide — but this time without the blank bullets.

Few people would seriously consider legalizing relative– or family-assisted suicide. The inherent dangers of this type of private killing are much too obvious. Thus, the goal must be physician-assisted suicide or, more accurately, health care professional-assisted suicide, since nurses also must necessarily be involved when the assisted suicide occurs in a health facility or home health situation. We doctors and nurses are the ones society is now considering asking to perform the act of terminating lives, but unlike the firing squad or the lethal injection team, we will know and have to live with the certain knowledge that we caused death.

It is doubly ironic that when a convicted murderer tries to discourage efforts by lawyers to stop his or her execution, this is considered as a sign of stress or mental disorder, while a sick person’s willingness to die is considered an understandable and even courageous decision! How do we reconcile the two views that killing is the ultimate punishment for a convicted murderer and, at the same time, the ultimate blessing for an innocent dying or disabled person?

Both the American Medical Association and the American Nurses Association have recently issued strong statements against assisted suicide and euthanasia. While acknowledging the very real deficiencies too often found in care at the end of life, these organizations call for more education and access to help instead of the simple but dangerous option of killing terminally-ill or severely-disabled people or helping such people kill themselves. It is eminently logical that our concern for life should not be limited to just the curable.

And, although some polls show that a significant number of doctors and nurses, like the general public, say they could support assisted suicide in a hypothetical case, when faced with the realities and ramifications of legalizing the practice, most express deep concerns and fears regarding its implementation.

Society has long insisted that health care professionals adhere to the highest standards of ethics as a form of protection for society. The vulnerability of a sick person and the inability of society to monitor every health care decision or action are powerful motivators to enforce such standards. For thousands of years doctors (and nurses) have embraced the Hippocratic standard that “I will give no deadly medicine to any one, nor suggest any such counsel.” Should the bright line doctors and nurses themselves have drawn to separate killing from caring now be erased by legislators or judges?

As a nurse, I am willing to do anything for my patients — except kill them. In my work with the terminally ill, I have been struck by how rarely these people say something like, “I want to end my life.” And the few who do express such thoughts are visibly relieved when their concerns and fears are addressed and dealt with instead of finding support for the suicide option. I have yet to see such a patient go on to commit suicide.

This should not be surprising. Think about it. All of us have had at least fleeting thoughts of suicide in a time of crisis. Imagine how we would feel if we confided this to a close friend or relative who replied, “You’re right. I can’t see any other way out either.” Would we consider this reply as compassionate or, instead, desperately discouraging? The terminally-ill or disabled person is no different from the rest of us in this respect.

I often wonder if right-to-die supporters really expect us doctors and nurses to be able to assist the suicide of one patient and then go on to care for a similar patient who wants to live without this having an effect on our ethics or our empathy. Do they really want to risk more Jack Kevorkians setting their own standards of who should live and who should die?

The excuse that the only real issue is the patient’s choice would be cold comfort to us doctors and nurses when we have to go home and face the fact that we helped kill another human being or had to remain silently powerless while some of us legally participated. There will be no blank bullets then for us — or for society.